What do you wish others knew about your experience?

Often times, people don’t realize that what they say about the weight of someone in the throes of a Crohn’s diagnosis can have a serious impact on that person’s self-esteem — especially when eating itself has become a painful process.

“One of the biggest things I had to go through when I got Crohn’s was the drastic weight loss,” wrote Vern, a Crohn’s advocate and blogger behind Leaving the Seat Down. “When I say drastic, it came hard and fast. It was scary at the time, and there was nothing I could do about it. I just stopped eating. It hurt way too much after I ate. I had dropped so much weight, at one point a stranger on the street asked if I had AIDS. Keep in mind, this was the late 80s and AIDS was a big ‘thing’ then. That comment hit hard for me and I didn’t want to go outside anymore. I didn’t want anyone to see me.”

“It’s frustrating, because our society is conditioned to believe skinnier is better. I remind myself that if they knew how hard I worked to gain and maintain my weight, they wouldn’t make those comments. They simply don’t understand the scope of Crohn’s disease and I use that as an opportunity to politely educate them.”

Worst of all, there are times when people make observations about how the disease might help them lose weight — even going as far as saying that they wish they had it so that they could shed some pounds, too.

“No, you really don’t,” said Healthline community member Haley W. “I’ve been down to almost skeletal, couldn’t stand up straight, too scared to laugh or cough or sneeze. But it’s all good because I lost weight? Nope!”

“I was once talking about how I couldn’t eat and a friend said ‘I wish I had that problem,’” Julianna C., a Healthline community member shared. “So ignorant.”

While it’s very common for these comments to revolve around weight loss, people also make the mistake of not understanding that people with Crohn’s are all different shapes and sizes.

“When I was first diagnosed, a coworker told me that the doctor must [have] been wrong because, ‘You’re too fat to have Crohn’s,’” — Pamela F., Healthline community member.

“I had a boss tell me that one time and I went to the bathroom and cried,” Kaitlin D., a Healthline community member said. “People can be so inconsiderate!”

Plus, many people experience fluctuations in both directions, which can also draw attention.

“As someone who’s battled Crohn’s disease for nearly 13 years, I have received my fair share of comments regarding my weight — from both sides of the spectrum,” says Natalie Hayden, Crohn’s activist and author of Lights Camera Crohn’s. “Prior to my diagnosis, when it was painful to eat, the weight was falling off of me. People would make comments about how gaunt I looked and how it must be nice to be so thin. Then, as I’ve been put on steroids to manage flares, I’d put on a few pounds from retaining water and salt. As a former news anchor, when I would return after a couple weeks of steroids, viewers would question if I was pregnant. As time goes on, hearing the comments doesn’t get easier, but you tend to gain a thicker skin.”

“After I was diagnosed, I was judged for how underweight I had gotten. People were saying that I needed to eat more, even though I physically couldn’t. And if the person knew that I had Crohn’s, they would judge me for the types of foods I was eating, telling me that I shouldn’t eat them, even if it was the only thing I could eat without getting sick. I feel like I can’t win sometimes when it comes to food talks,” Kirsten Curtis tells Healthline.

“I remind myself that if they knew how hard I worked to gain and maintain my weight, they wouldn’t make those comments.” — Alexa Federico

Next up, there are those people who think that they know the best way for people with Crohn’s to eat to manage their weight, even if they really have no idea what eating with Crohn’s is like.

“I find all the unsolicited advice or assumptions to be kind of hurtful — like when people assume I want their advice on what diet or supplement to try, or they just flat out assume I can’t eat gluten because I must have celiac, and they refuse to pass the rolls or bread and pick apart whatever is on my plate,”Katie C., a Healthline community member said.

Even if the comment is coming from a well-intentioned place, it’s not appropriate. “They mean to be helpful, but they aren’t actually considering me as an individual, and that’s why it’s less helpful.”

There are also comments like: ‘Can you eat that?’ ‘Have you tried X diet?’ ‘You should get an allergy test done.’ “As if eating isn’t enough of a minefield,” Rosalie J., a Healthline community member said. “I know how to justify my choices to someone who obviously has no understanding of the disease!”

“One type of comment that bothers me is the, ‘Maybe you should give up dairy, soy, gluten, nightshades, meat, eggs, fruits, and processed foods because my friend’s cousin’s neighbor did it...’ Well that excludes most foods I can eat safely, so do you suggest I live off of water and sunlight?” Jaime Weinstein, an IBD patient advocate sharing her IBD journey at CROHNicleS, tells Healthline.

The bottom line here? It’s never a good idea to comment on someone’s weight in any situation — but especially if they’re dealing with a chronic illness that may affect their weight, such as Crohn’s.

Even if you think you’re complimenting them, commiserating with their struggles, or saying something that you feel is more about your own weight than theirs, it’s clear that remarks related to weight, food, and diet are more likely to make someone with Crohn’s feel worse rather than better.

And if you yourself are dealing with comments of this nature being directed at you, there are some productive ways to deal with it.

“I like to reply with: ‘I would trade my weight for not having Crohn’s any day!’” says Federico. “I’ve found by using polite but direct ways, I can get my message across, and it usually ends with the other person agreeing with me.”

It can also be helpful to understand that the comments are generally coming from a place of ignorance rather than cruelty.

“Our society is obsessed with appearance and body image. If you’re living with IBD and someone makes a comment about your body, (if you are comfortable) I always recommend taking time to explain to them what it actually means to live with this disease so they can understand why it is hurtful to make this type of comment,”says patient advocate Lilly Stairs.

“I like to give people the benefit of the doubt and try not to think of their words as malicious,” Hayden explains. “Rather than smiling or laughing along with the comments, communicate with friends and family and teach them about how the disease impacts you physically, mentally, and emotionally.”

“Since IBD is an invisible illness, it’s easy for us to mask our pain and suffering. As soon as you share your story and talk with those close to you, you open yourself up to support and better understanding.”

Julia is a former magazine editor turned health writer and “trainer in training.” Based in Amsterdam, she bikes every day and travels around the world in search of tough sweat sessions and the best vegetarian fare.